Connect with us

Science

Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth

Published

on

Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth

In April, a group of Orange County parents flew to Sacramento to attend a conference hosted by Disability Voices United, an advocacy group for people with disabilities and their families.

They wanted to emphasize three issues to state officials at the event: the paucity of mental health care for children with developmental disabilities, the confusing mess of government systems meant to help them, and the gaps in availability of day-to-day caregiving.

Among them was Christine LyBurtus, a single mom living in Fullerton. Last fall, after repeated rounds of 911 calls and emergency hospitalizations, she had made the agonizing decision to move her son, Noah, who is autistic, into a state-operated facility for at least a year.

LyBurtus had struggled to find the support she needed to keep him at home. “Families are being forced to give up their children to group homes and treatment centers over 12 hours from their homes … or out of the state of California entirely,” she told the crowd at the conference.

Christine Lyburtus is embraced by Beth Martinko outside elevators in the Capitol Annex Swing Space building in Sacramento.

Advertisement

(Jose Luis Villegas / For The Times)

“I beg you to hear us,” she said to state officials before turning from the microphone.

Despite the growing diagnosis of autism, which has been estimated to affect more than 2 million children and teens across the country, experts and advocates have bemoaned glaring gaps in services to meet the mental health needs of autistic youth.

Some researchers have estimated that upward of 90% of autistic youth have overlapping conditions like anxiety, depression or ADHD. Many have suffered alarming levels of trauma.

Advertisement

Yet “there are very few specialized facilities in the country that meet the unique needs of individuals with autism and co-occurring mental health conditions,” especially in crisis situations, said Cynthia Martin, senior clinical psychologist at the Child Mind Institute, which is based in New York.

Between 2020 and 2021, the number of California children and teens served by the state developmental disability system who were deemed to have “complex needs” — a state term for those who needed a range of crisis services or landed in a locked psychiatric ward — rose from 536 to 677, according to a report released last year by the California Department of Developmental Services.

California has been working to build more facilities to house and support such youth, including STAR homes that provide “crisis stabilization” for roughly a year, like the one into which Noah moved. But the state has seen an uptick in the number of people in need of such programs, as well as more former residents boomeranging back for “further stabilization,” the state report said.

As of this summer, the STAR homes could accommodate only 15 teens across the state; the one that accepted Noah budgets for more than $1 million per resident annually.

There are other community facilities where developmentally disabled youth in crisis can be placed, but “there remains a critical need for a ‘can’t say no’ option for individuals whom private sector vendors cannot or will not serve,” the state report concluded.

Advertisement

Autistic people and their families have also lamented that they cannot find adequate help in their communities before they reach a crisis point. Researchers have found that mental health workers are often unprepared to work with people with intellectual or developmental disabilities or may chalk up symptoms to their disabilities, rather than overlapping needs.

Christine LyBurtus looks at a drawing of her son, Noah

Christine LyBurtus looks at a drawing of her son, Noah, in their Fullerton home.

(Mel Melcon / Los Angeles Times)

“It’s pretty common for a mental health practitioner to turn away someone with a developmental disability or say, ‘I don’t serve that population,’” said Zoe Gross, director of advocacy for the Autistic Self Advocacy Network.

Alison D. Morantz, director of the Stanford Intellectual and Developmental Disabilities Law and Policy Project, called it a “scandal” that amid a scarcity of psychiatric beds for youth, “if a family member discloses that their child is on the autistic spectrum, they can say, ‘No thank you.’”

Advertisement

“It puts parents in impossible situations,” she said.

The biggest challenges for many families of autistic youth often surround aggression, which isn’t a core feature of autism, but the symptom of other issues that need to be uncovered, child and adolescent psychiatrist Dr. Matthew Siegel told a federal committee last year.

“You have to look underneath or in front of that … for what could be contributing or what is driving this aggression,” said Siegel, founder of the Autism and Developmental Disorders Inpatient Research Collaborative. He and other researchers have seen promising results from specialized units at hospitals, but few exist — “not even one per state.”

“Even specialized clinics that can work on these challenges are quite rare,” he said.

The Supreme Court has ruled that institutionalizing people with disabilities who could live in the community is discriminatory if a community placement “can be reasonably accommodated.” Federal investigations have, at times, faulted states for failing to provide needed services for people to stay in their homes or communities.

Advertisement

The law “requires that services are provided in the most integrated setting appropriate to the needs of a person with a disability,” according to the U.S. Department of Health and Human Services.

But the struggle to find needed services can end up pushing autistic people with mental health needs out of their communities. Bonnie Ivers, director of clinical services for the Regional Center of Orange County, said last year that “more and more families are having to review options that are outside of our county.”

Some Californians even go outside the state: As of June 2022, there were 49 youth with “complex needs” getting services outside of California, and an additional 33 “at risk of being referred to out-of-state resources,” according to the developmental services department.

In the following year, that number grew to 57 youth out of state — and an additional 64 who might be at risk of joining them. The numbers may actually be higher: The state agency says it learns about out-of-state placements only when families inform the regional centers that coordinate developmental disability services.

Nancy Bargmann, director of the California Department of Developmental Services, said their goal is to provide “a continuum of supports” so that families “don’t need to make that really hard decision of having their child not live at home.”

Advertisement

California has launched more than a dozen teams focused on crisis prevention, called START teams, which it says have helped keep people in their homes. Their services include connecting different systems that assist families, such as mental health providers and disability services.

But they do not yet exist everywhere in the state. California also has mobile “Crisis Assessment Stabilization Teams” — or CAST — that are meant for people who have exhausted other kinds of help or are at risk of having to move into more restrictive settings. There were three of them as of this spring, according to the developmental services department.

Judy Mark, president of the advocacy group Disability Voices United, argued it is counterproductive to try to stabilize a child away from his or her family. If at all possible, she said, California should be ensuring constant support in the home, which she argued would also be less costly than caring for a child in a STAR facility.

But disability services providers say that getting such caregivers has continued to be a challenge, with state rates for such workers outstripped by what they can earn elsewhere. Increases in those provider rates have been slowly phased in over time, with the next bump slated for January.

In many cases, “what you’d want to see is somebody, 24 hours a day, in the home helping the parent,” said Larry Landauer, executive director of the Regional Center of Orange County. But “that’s where we have been just drastically short on staffing.”

Advertisement

All the gaps in the system can come to a head when young people with developmental disabilities hit puberty, especially if they face “the inability to communicate in such a complex and confusing time,” said California Commission on Disability Access member Hector Ramírez, who is autistic and lives in the San Fernando Valley.

If autistic teens and their families cannot get the support they need, Ramírez said, it “has compounding consequences that result in people just getting worse — when they shouldn’t be getting worse.”

Science

After rash of overdose deaths, L.A. banned sales of kratom. Some say they lost lifeline for pain and opioid withdrawal

Published

on

After rash of overdose deaths, L.A. banned sales of kratom. Some say they lost lifeline for pain and opioid withdrawal

Nearly four months ago, Los Angeles County banned the sale of kratom, as well as 7-OH, the synthetic version of the alkaloid that is its active ingredient. The idea was to put an end to what at the time seemed like a rash of overdose deaths related to the drug.

It’s too soon to tell whether kratom-related deaths have dissipated as a result — or, really, whether there was ever actually an epidemic to begin with. But many L.A. residents had become reliant on kratom as something of a panacea for debilitating pain and opioid withdrawal symptoms, and the new rules have made it harder for them to find what they say has been a lifesaving drug.

Robert Wallace started using kratom a few years ago for his knees. For decades he had been in pain, which he says stems from his days as a physical education teacher for the Glendale Unified School District between 1989 and 1998, when he and his students primarily exercised on asphalt.

In 2004, he had arthroscopic surgery on his right knee, followed by varicose vein surgery on both legs. Over the next couple of decades, he saw pain-management specialists regularly. But the primary outcome was a growing dependence on opioid-based painkillers. “I found myself seeking doctors who would prescribe it,” he said.

He leaned on opioids when he could get them and alcohol when he couldn’t, resulting in a strain on his marriage.

Advertisement

When Wallace was scheduled for his first knee replacement in 2021 (he had his other knee replaced a few years later), his brother recommended he take kratom for the post-surgery pain.

It seemed to work: Wallace said he takes a quarter of a teaspoon of powdered kratom twice a day, and it lets him take charge of managing his pain without prescription painkillers and eases harsh opiate-withdrawal symptoms.

He’s one of many Angelenos frustrated by recent efforts by the county health department to limit access to the drug. “Kratom has impacted my life in only positive ways,” Wallace told The Times.

For now, Wallace is still able to get his kratom powder, called Red Bali, by ordering from a company in Florida.

However, advocates say that the county crackdown on kratom could significantly affect the ability of many Angelenos to access what they say is an affordable, safer alternative to prescription painkillers.

Advertisement

Kratom comes from the leaves of a tree native to Southeast Asia called Mitragyna speciosa. It has been used for hundreds of years to treat chronic pain, coughing and diarrhea as well as to boost energy — in low doses, kratom appears to act as a stimulant, though in higher doses, it can have effects more like opioids.

Though advocates note that kratom has been used in the U.S. for more than 50 years for all sorts of health applications, there is limited research that suggests kratom could have therapeutic value, and there is no scientific consensus.

Then there’s 7-OH, or 7-Hydroxymitragynine, a synthetic alkaloid derived from kratom that has similar effects and has been on the U.S. market for only about three years. However, because of its ability to bind to opioid receptors in the body, it has a higher potential for abuse than kratom.

Public health officials and advocates are divided on kratom. Some say it should be heavily regulated — and 7-OH banned altogether — while others say both should be accessible, as long as there are age limitations and proper labeling, such as with alcohol or cannabis.

In the U.S., kratom and 7-OH can be found in all sorts of forms, including powder, capsules and liquids — though it depends on exactly where you are in the country. Though the Food and Drug Administration has recommended that 7-OH be included as a Schedule 1 controlled substance under the Controlled Substances Act, that hasn’t been made official. And the plant itself remains unscheduled on the federal level.

Advertisement

That has left states, counties and cities to decide how to regulate the substances.

California failed to approve an Assembly bill in 2024 that would have required kratom products to be registered with the state, have labeling and warnings, and be prohibited from being sold to anyone younger than 21.

It would also have banned products containing synthetic versions of kratom alkaloids. The state Legislature is now considering another bill that basically does the same without banning 7-OH — while also limiting the amount of synthetic alkaloids in kratom and 7-OH products sold in the state.

“Until kratom and its pharmacologically active key ingredients mitragynine and 7-OH are approved for use, they will remain classified as adulterants in drugs, dietary supplements and foods,” a California Department of Public Health spokesperson previously told The Times.

On Tuesday, California Gov. Gavin Newsom announced that the state’s efforts to crack down on kratom products has resulted in the removal of more than 3,300 kratom and 7-OH products from retail stores. According to a news release from the governor’s office, there has been a 95% compliance rate from businesses in removing the products.

Advertisement

(Los Angeles Times photo illustration; source photos by Getty Images)

Newsom has equated these actions to the state’s efforts in 2024 to quash the sale of hemp products containing cannabinoids such as THC. Under emergency state regulations two years ago, California banned these specific hemp products and agents with the state Department of Alcoholic Beverage Control seized thousands of products statewide.

Since the beginning of 2026, there have been no reported violations of the ban on sales of such products.

“We’ve shown with illegal hemp products that when the state sets clear expectations and partners with businesses, compliance follows,” Newsom said in a statement. “This effort builds on that model — education first, enforcement where necessary — to protect Californians.”

Advertisement

Despite the state’s actions, the Los Angeles County Board of Supervisors is still considering whether to regulate kratom, or ban it altogether.

The county Public Health Department’s decision to ban the sale of kratom didn’t come out of nowhere. As Maral Farsi, deputy director of the California Department of Public Health, noted during a Feb. 18 state Senate hearing, the agency “identified 362 kratom-related overdose deaths in California between 2019 and 2023, with a steady increase from 38 in 2019 up to 92 in 2023.”

However, some experts say those numbers aren’t as clear-cut as they seem.

For example, a Los Angeles Times investigation found that in a number of recent L.A. County deaths that were initially thought to be caused by kratom or 7-OH, there wasn’t enough evidence to say those drugs alone caused the deaths; it might be the case that the danger is in mixing them with other substances.

Meanwhile, the actual application of this new policy seems to be piecemeal at best.

Advertisement

The county Public Health Department told The Times it conducted 2,696 kratom-related inspections between Nov. 10 and Jan. 27, and found 352 locations selling kratom products. The health department said the majority stopped selling kratom after those inspections; there were nine locations that ignored the warnings, and in those cases, inspectors impounded their kratom products.

But the reality is that people who need kratom will buy it on the black market, drive far enough so they get to where it’s sold legally or, like Wallace, order it online from a different state.

For now, retailers who sell kratom products are simply carrying on until they’re investigated by county health inspectors.

Ari Agalopol, a decorated pianist and piano teacher, saw her performances and classes abruptly come to a halt in 2012 after a car accident resulted in severe spinal and knee injuries.

“I tried my best to do traditional acupuncture, physical therapy and hydrocortisone shots in my spine and everything,” she said. “Finally, after nothing was working, I relegated myself to being a pain-management patient.”

Advertisement

She was prescribed oxycodone, and while on the medication, battled depression, anhedonia and suicidal ideation. She felt as though she were in a fog when taking oxycodone, and when it ran out, ”the pain would rear its ugly head.” Agalopol struggled to get out of bed daily and could manage teaching only five students a week.

Then, looking for alternatives to opioids, she found a Reddit thread in which people were talking up the benefits of kratom.

“I was kind of hesitant at first because there’re so many horror stories about 7-OH, but then I researched and I realized that the natural plant is not the same as 7-OH,” she said.

She went to a local shop, Authentic Kratom in Woodland Hills, and spoke to a sales associate who helped her decide which of the 47 strains of kratom it sold would best suit her needs.

Agalopol currently takes a 75-milligram dose of mitragynine, the primary alkaloid in kratom, when necessary. It has enabled her to get back to where she was before her injury: teaching 40 students a week and performing every weekend.

Advertisement

Agalopol believes the county hasn’t done its homework on kratom. “They’re just taking these actions because of public pressure, and public pressure is happening because of ignorance,” she said.

During the course of reporting this story, Authentic Kratom has shut down its three locations; it’s unclear if the closures are temporary. The owner of the business declined to comment on the matter.

When she heard the news of the recent closures, Agalopol was seething. She told The Times she has enough capsules of kratom for now, but when she runs out, her option will have to be Tylenol and ibuprofen, “which will slowly kill my liver.”

“Prohibition is not a public health strategy,” said Jackie Subeck, executive director of 7-Hope Alliance, a nonprofit that promotes safe and responsible access to 7-OH for consumers, at the Feb. 18 Senate hearing. “[It’s] only going to make things worse, likely resulting in an entirely new health crisis for Californians.”

Advertisement
Continue Reading

Science

There were 13 full-service public health clinics in L.A. County. Now there are 6

Published

on

There were 13 full-service public health clinics in L.A. County. Now there are 6

Because of budget cuts, the Los Angeles County Department of Public Health has ended clinical services at seven of its public health clinic sites.

As of Feb. 27, the county is no longer providing services such as vaccinations, sexually transmitted infection testing and treatment, or tuberculosis diagnosis and specialty TB care at the affected locations, according to county officials and a department fact sheet.

The sites losing clinical services are Antelope Valley in Lancaster; the Center for Community Health (Leavy) in San Pedro, Curtis R. Tucker in Inglewood, Hollywood-Wilshire, Pomona, Dr. Ruth Temple in South Los Angeles, and Torrance. Services will continue to be provided by the six remaining public health clinics, and through nearby community clinics.

The changes are the result of about $50 million in funding losses, according to official county statements.

Advertisement

“That pushed us to make the very difficult decision to end clinical services at seven of our sites,” said Dr. Anish Mahajan, chief deputy director of the L.A. County Department of Public Health.

Mahajan said the department selected clinics with relatively lower patient volumes. Over the last month, he said, the department has sent letters to patients about the changes, and referred them to unaffected county clinics, nearby federally qualified health centers or other community providers. According to Mahajan, for tuberculosis patients, particularly those requiring directly observed therapy, public health nurses will continue visiting patients.

Public health clinics form part of the county’s healthcare safety net, serving low-income residents and those with limited access to care. Officials said that about half of the patients the county currently sees across its clinics are uninsured.

Mahajan noted that the clinics were established decades ago, before the Affordable Care Act expanded Medi-Cal coverage and increased the number of federally qualified health centers. He said that as more residents gained access to primary care, utilization at some county-run clinics declined.

“Now that we have a more sophisticated safety net, people often have another place to go for their full range of care,” he said.

Advertisement

Still, the closures have unsettled providers who work closely with local vulnerable populations.

“I hate to see any services that serve our at-risk and homeless community shut down,” said Mark Hood, chief executive of Union Rescue Mission in downtown Los Angeles. “There’s so much need out there, so it always is going to create hardship for the people that actually need the help the most.”

Union Rescue Mission does not receive government funding for its healthcare services, Hood said. The mission’s clinics are open not only to shelter guests, up to 1,000 people nightly, but also to people living on the streets who walk in seeking care.

Its dental clinic alone sees nearly 9,000 patients a year, Hood said.

“We haven’t seen it yet, but I expect in the coming days and weeks we’ll see more people coming through our doors looking for help,” he said. “They’re going to have to find help somewhere.” Hood said women experiencing homelessness are especially vulnerable when preventive care, including sexual and reproductive health services, becomes harder to access.

Advertisement

County officials said staffing impacts so far have been managed through reassignment rather than layoffs. Roughly 200 to 300 positions across the department have been eliminated amid funding cuts, officials said, though many were vacant. About 120 employees whose positions were affected have been reassigned; according to Mahajan, no one has been laid off.

The clinic closures come amid broader fiscal uncertainty. Mahajan said that due to the Trump administration’s “Big Beautiful Bill,” Los Angeles County could lose $2.4 billion over the next several years. That funding, he said, supports clinics, hospitals and community clinic partners now absorbing patients who previously went to the clinics that closed on Feb. 27.

In response, the L.A. County Board of Supervisors has backed a proposed half-cent sales tax measure that would generate hundreds of millions of dollars annually for healthcare and public health services. Voters are expected to consider the measure in June.

Advertisement
Continue Reading

Science

Mobile clinic brings mammograms to women on Skid Row

Published

on

Mobile clinic brings mammograms to women on Skid Row

Sharon Horton stepped through the door of a sky-blue mobile clinic and onto a Skid Row sidewalk. She wore a yellow knit beanie, gold hoop earrings and the relieved grin of a woman who has finally checked a mammogram off her to-do list.

It had been years since her last breast cancer screening procedure. This one, which took place in City of Hope’s Cancer Prevention and Screening mobile clinic, was faster and easier. The staff was kind. The machine that X-rayed her breast was more comfortable than the cold hard contraption she remembered.

Relatively speaking, of course — it was still a mammogram.

“It’s like, OK, let me go already!” Horton, 68, said with a laugh.

The clinic was parked on South San Pedro Street in front of Union Rescue Mission, the nonprofit shelter where Horton resides. Within a week, City of Hope, a cancer research hospital, would share the results with Horton and Dr. Mary Marfisee, the mission’s family medical services director. If the mammogram detected anything of concern, they’d map out a treatment plan from there.

Advertisement

Naureen Sayani, 47, a resident of Union Rescue Mission, left, discusses her medical history with Adriana Galindo, a medical assistant, before getting a mammogram on last week.

(Kayla Bartkowski / Los Angeles Times)

“It’s very important to take care of your health, and you need to get involved in everything that you can to make your life a better life,” said Horton, who is looking forward to a forthcoming move into Section 8 housing.

Horton was one of the first patients of a new women’s health initiative from UCLA’s Homeless Healthcare Collaborative at Union Rescue Mission. Staffed by third-year UCLA Medical School students and led by Marfisee, a UCLA assistant clinical professor of family medicine, the clinic treats mission residents as well as unhoused people living in the surrounding neighborhood.

Advertisement

The new cancer screening project arrives at a time of dire financial pressures on county public health services.

Citing rising costs and a $50-million reduction in federal, state and local grant and contract income, the Los Angeles County Department of Public Health on Feb. 27 ended services at seven of 13 public clinics that provide vaccines, tests and treatment for sexually transmitted diseases and other services to housed and unhoused county residents.

Although Union Rescue Mission’s own funding comes mainly from private sources and is less imperiled by public cuts, the 135-year-old shelter expects the need for its services to rise, Chief Executive Mark Hood said.

Even as unsheltered homelessness declined for the last two years across Los Angeles County, the unsheltered population on Skid Row — long seen as the epicenter of the region’s homelessness crisis — grew 9% in 2024, the most recent year for which census data are available.

For many local women navigating daily concerns over housing, food and personal safety, “their own health is not a priority,” Marfisee said.

Advertisement

Those whose problems have become too serious to ignore face daunting obstacles to care. Marfisee recalled one patient who came to her with a lump in her breast and no identification.

In order to get a mammogram, Marfisee explained, the woman first needed to obtain a birth certificate, and then a state-issued identification card. Then she needed to enroll in Medi-Cal. After that, clinic staff helped her find a primary care physician who could order the imaging test.

Given the barriers to preventative care, homeless women die from breast cancer at nearly twice the rate of securely housed women, a 2019 study found. Marfisee’s own survey of the mission’s female residents found that nearly 90% were not up to date on recommended cancer screenings like mammograms and pap smears, which detect early cervical cancer.

To address this gap, Marfisee — a dogged patient advocate — reached out to City of Hope. The Duarte-based research and treatment center unveiled in March 2024 its first mobile cancer screening clinic, a moving van-sized clinic on wheels that it deploys to food banks and health centers, as well as to companies offering free mammograms as an employee benefit.

“In true Dr. Mary fashion, she saw the vision,” said Jessica Thies, the mobile screening program’s regional nursing director. After working through some logistical hurdles, the mission and City of Hope secured a date for the van’s first visit.

Advertisement

The next challenge was getting the word out to patients. Marfisee and her students walked through the surrounding neighborhood, went cot to cot in the women’s dorm and held two informational sessions in December and January to answer patients’ questions.

At the sessions, the team walked through the basics of who should get a mammogram (women age 40 or older, those with a family history of breast cancer) and the procedure itself. (“Like a tortilla maker?” one woman asked skeptically after hearing a description of the mammography unit.)

The medical students were able to dispel rumors some women had heard: The test doesn’t damage breast tissue, nor do the X-rays increase cancer risk. Others questioned a mammogram’s value: What good was it knowing they had cancer if they couldn’t get follow-up care?

On this latter point, Marfisee is determined not to let patients fall through the cracks.

Thirteen patients received mammograms at the van’s first visit on Wednesday. Within a week, City of Hope will contact patients with their results and send them to Marfisee and her team. She is already mentally mapping the next steps should any patient have a situation that requires a biopsy or further imaging: working with their case manager at the mission, calling in favors, wrangling with any insurance the patient might have.

Advertisement

“It’ll be a good fight,” Marfisee said, as residents in the adjacent cafeteria carried trays of sloppy joes and burgers to their lunch tables. “But we’ll just keep asking for help and get it done.”

Continue Reading

Trending